“The response to injustice is to share. The response to despair is a limitless trust and hope. The response to prejudice and hatred is forgiveness. To work for community is to work for humanity.”— Jean Vanier, L’Arche Founder (from “Community and Growth”)
Early this morning I joined Maria on the air mattress we had blown up for her to have a ‘sleep over’ in our room. Even sleeping in her room just down the hall from us is an act of courage for our daughter. These slumber parties seem to give her great joy. Today she was as warm and rosy and cuddly as a little kid; she put her arm around my neck and in a sleepy voice said, “Maybe you could sell this house and come live with me at TDC. Sometimes I get very sad there because I miss you.”
Although we have started cranking up the wheels of the system related to her health, there is something not well about her body and we are worried. At very close to 200 lbs, though she is under 5 feet tall, her weight is a significant problem. Her ankles are swelling regularly though it is not edema as best as we can tell since edema is more uniform and usually extends further up a person’s legs. This inflammation is more lumpy and very painful. Tomorrow we will talk to the TDC folks, again, to try to keep pushing on the system to get to root causes. When Maria had her surgery earlier in the summer, the surgeon had to remove one of her ovaries along with the cyst and it was this summer that she gained so much weight. we wonder if some of the hormonal changes that surgery caused might in some way be related to her health issues. At least this is one possible track to follow.
She has also regressed into significant dependence—we are having to retrain and re-motivate her towards greater independence about everything, down to tying her shoe laces. Somehow, though, my response is different this time around. I am so not interested in blaming, accusing or even necessarily “fixing” her or her situation. I have found some new patience and without as much reactiveness (of which I have often been guilty in the past), I continue to marvel at this young woman who calls me mami.
For Christmas I got her a Coach ‘wristlet’—a small wallet with a wrist strap–and put a $50.00 Visa gift card in it. I explained that she is grown up enough now that we wanted her to have a credit card. She was transported. It was wonderful watching her carefully sign her name on the strip on the back of the card. We talked in general about what she might use it for on Christmas Day and then got on with other things.
Yesterday was Sherod’s birthday. We sat down to plan the day mid-morning and agreed that the day needed to include a trip into Prattville and that we might have lunch at a restaurant as part of that plan. Maria’s face literally shone (and these days when she is lethargic and quite emotionally flat a lot of the time, that in itself is a gift) and she said, “I know what, Dad! I can invite you to lunch with my credit card.” We talked that through and eventually agreed she’d still save it for outings from TDC in Tallahassee but it was the kind of generosity I have experienced from Maria since the very beginning. Her beauty takes my breath away.
Trying to manage all the pieces, trying to be true to her and honest about her behavior issues and Sherod’s and my needs and limitations, recognizing that the distance between us and TDC is greater than we are comfortable with raises anxiety in some ways and also offers tantalizing new possibilities.
What happens to adults with developmental disabilities in a rural county in Alabama? How does a small working farm create a space for something like an adult day program for this fragile segment of our community—can it be part of the resounding God-yes not just our daughter but others in this area might need to get a better chance? I’ve spent some time reading about L’Arche communities in this country and earlier, Maria and I went and saw Wild together. Not the greatest movie for her, but for me a reminder about several things including the call to “do the kindest thing I can”. In this time of on-going vocational discernment, I can’t not wonder about how to offer not only myself, but this amazing little farm of ours, for the kind of community that opens space for the very fragile.
She’s with us for another week, the longest time so far since she moved into BARC. Best Christmas gift. Ever.
Your posts always feed me on so many levels. I hope sometime that we can share a cup of coffee together in Tallahassee!
The kindest thing you can do…..is what you are already doing. Loving, looking, being with her, hearing her loneliness when she is away from you. Hopefully we can find a way for her to be closer than Tallahassee. I don’t know enough about the details of her condition. But I would like to know more and think more about resources. The more I am around her, the more I realize she is a beloved child of God whom we must all take part in caring for.
I can imagine some lengthy conversations about this. I keep hearing your voice: our society will be judged on how it cares for the most fragile among us.
At this moment, all I can say is God bless all of you.